Creating or destructing value in use? Handling cognitive impairments in co-creation with serious and chronically ill users

Skarli, Jim Broch Article Creating or destructing value in use? Handling cognitive impairments in co-creation with serious and chronically ill users Administrative Sciences Provided in Cooperation with: MDPI – Multidisciplinary Digital Publishing Institute, Basel Suggested Citation: Skarli, Jim Broch (2021) : Creating or destructing value in use? Handling cognitive impairments in co-creation with serious and chronically ill users, Administrative Sciences, ISSN 2076-3387, MDPI, Basel, Vol. 11, Iss. 1, pp. 1-17, https://doi.org/10.3390/admsci11010016 This Version is available at: https://hdl.handle.net/10419/240108 Standard-Nutzungsbedingungen: Die Dokumente auf EconStor dürfen zu eigenen wissenschaftlichen Zwecken und zum Privatgebrauch gespeichert und kopiert werden. Sie dürfen die Dokumente nicht für öffentliche oder kommerzielle Zwecke vervielfältigen, öffentlich ausstellen, öffentlich zugänglich machen, vertreiben oder anderweitig nutzen. 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Handling Cognitive Impairments in Co-Creation with Serious and Chronically Ill Users Jim Broch Skarli   Citation: Skarli, Jim Broch. 2021. Creating or Destructing Value in Use? Handling Cognitive Impairments in Co-Creation with Serious and Chronically Ill Users. Administrative Sciences 11: 16. https://doi.org/10. 3390/admsci11010016 Received: 21 December 2020 Accepted: 11 February 2021 Published: 15 February 2021 Publisher’s Note: MDPI stays neutral with regard to jurisdictional claims in published maps and institutional affiliations. Copyright: © 2021 by the author. Licensee MDPI, Basel, Switzerland. This article is an open access article distributed under the terms and conditions of the Creative Commons Attribution (CC BY) license (https:// creativecommons.org/licenses/by/ 4.0/). Inland School of Business and Social Sciences, Inland Norway University of Applied Sciences, Box 400, N-2418 Elverum, Norway; [email protected] Abstract: Theoretically based on public service logic (PSL), this article addresses how users’ cognitive impairments can affect co-creation processes and value outcomes in a public sector environment, and how the service providers can handle this issue. It directs attention to value creation in the context of vulnerable and unwilling service users and contributes to understanding how cognitive gaps between public health care services and users inhibit value co-creation. Based on qualitative interview data, findings substantiate that cognitive impairments reduce the users’ health literacy and therefore affect both their ability and willingness to participate in co-creation. The study recognizes that there is a built-in asymmetry between the involved actors and that failing to reduce this asymmetry through adequate facilitation by the service providers, can result in co-destruction of value in use. It is acknowledged that the users might not be cognitively able to determine whether they actually come better or worse off in the end. Therefore, it is suggested that the service provider might need to play a larger role in determining what is positive or negative value in use. Hence, this article adds to PSL by clearly emphasizing the key role played by public service organizations (PSOs) in facilitating the value creation process, which takes place during service delivery. Keywords: public service logic; co-creation; co-destruction; value in use; health care; health literacy; cognitive impairments; vulnerable users 1. Introduction Co-creation of value during delivery of health care services receives a great deal of attention (Hardyman et al. 2015;McColl-Kennedy et al. 2012;Osei-Frimpong et al. 2015). It is assumed that the synergies between the users and the providers in the design and delivery of public services pave the way for the establishment of a co-creating partnership, which is able to enhance the process of value creation (Pestoff 2012;Voorberg et al. 2015). When the patient’s knowledge and experience are appreciated and used in conjunction with the professional competence in developing the services, these services will be better provided for the end-users (Ministry of Health and Care Services 2017;NOU 2011). Nevertheless, some challenges of co-creation seem to be somewhat neglected, especially when it comes to users with serious and chronic illnesses. As pointed out by Zainuddin et al. (2016) , patients or users need to make behavioral or cognitive contributions to cocreate value. Therefore, they need to have the proper knowledge, skills, and motivation to do so (Kaartemo and Känsäkoski 2018). If the health care organization’s knowledge is communicated poorly, and the knowledge resources of the patients and their families are inadequate, there is a high risk for ineffective collaboration, resulting in value co-destruction (Frow et al. 2016). Hence, the possibility of negative value outcomes should be acknowledged. Value creation in the interaction between citizens and public administration can refer to the creation of public value (Bryson et al. 2017;Meynhardt 2009). Other scholars direct attention to value for the individual service users (Capolupo et al. 2019;Grönroos et al. 2015;Grönroos and Voima 2013;Hardyman 2017;Hardyman et al. 2015;Palumbo and Adm. Sci. 2021,11, 16. https://doi.org/10.3390/admsci11010016 https://www.mdpi.com/journal/admsci Adm. Sci. 2021,11, 16 2 of 17 Manna 2018). This article follows the latter direction, responding to requests for empirical studies of value-in-use, which take into consideration both the positive and negative nature of the concept (Medberg and Grönroos 2020). Focusing on the interaction between the individual user and the health care provider, it also responds to calls for empirical analyses of value co-creation in micro-level patient encounters (Hardyman et al. 2015; Joiner and Lusch 2016;Osei-Frimpong et al. 2015;Sweeney et al. 2015). The study is theoretically based on public service logic (PSL) (Alford 2016;Osborne 2010;Osborne et al. 2018) applying its understanding of value creation and value in use (Grönroos 2008,2011,2019; Grönroos et al. 2015;Grönroos and Voima 2013). The following research questions are addressed: • How do cognitive impairments affect users’ ability and willingness to participate in value co-creation? • How do public service providers handle this co-creation, and how can they facilitate the creation of value in use in this context? Drawing on a study of users with neurological conditions in the municipal health care services, the article addresses how the users’ cognitive impairments can affect co-creation processes and value outcomes, and how the service providers can handle this issue. By doing so, attention is directed to knowledge gaps concerning value creation in the context of vulnerable and unwilling service users, as pointed out in the literature (Dietrich et al. 2017; Osborne 2018). It contributes to understanding how cognitive gaps between public health care services and users inhibit value co-creation. An understanding identified as unclear by scholars (Kaartemo and Känsäkoski 2018;Palumbo 2016). Furthermore, it adds to PSL by drawing attention to the key role played by public service organizations (PSOs) and frontline service staff in facilitating the value creation process, which takes place during service delivery. The term “neurological conditions” refers to disorders and diseases in the nervous system (Ministry of Health and Care Services 2011). Some muscle diseases are also included in the definition (The Norwegian Medical Association 2007). Most common in the Norwegian municipal health care services are multiple sclerosis, Parkinson’s disease, stroke, epilepsy, and brain or spinal cord injuries. People in this group often have complex needs, which frequently include cognitive manifestations (Fure 2008;Hämäläinen and Rosti-Otajärvi 2016;Iaffaldano et al. 2014;Sharbafshaaer 2018;Yang et al. 2016). This reinforces the understanding that the development and provision of services to these users should take their needs and situation into consideration, strongly underlining the importance of user involvement in both. On the other hand, users may experience challenges due to the severity of the symptoms and cognitive manifestations originating from their conditions. The Norwegian Ministry of Health and Care services states that the health care services must take into account the users’ abilities and prerequisites in its organizational and service development. This includes making it easier for users to find the right service offerings, and that these are customized to the user (Ministry of Health and Care Services 2019). Pointing to the service providers’ responsibility to support ease of access and engagement by eliminating barriers, it also shifts the burden of responsibility from the users to the service provider (McCormack et al. 2017). This article is structured into five main sections. First, it presents the theoretical approach based on PSL, including how value, co-creation, and co-destruction is understood in this context. Second, it describes the methodological approach, including the sample and settings, and how the data collection and analyses were conducted. Third, the empirical findings are presented, such as the occurrence of cognitive impairments among the users, how these impairments are expressed, and how the service providers facilitate co-creation with the users at the individual level. Fourth, it discusses the findings, focusing on implications on co-creation and value in use. Lastly, it draws some conclusions and presents some limitations of the study. Adm. Sci. 2021,11, 16 3 of 17 2. Theoretical Approach 2.1. Public Service Logic PSL introduces a break with the New Public Management (NPM)—inspired school of thought in public management theory and practice (Alford 2016;Osborne 2010,2018), suggesting that value is co-created, by PSOs and users, in addition to third parties (Osborne 2018 ;Osborne et al. 2016;Osborne and Strokosch 2013). According to PSL, the service users create the value of public service, with PSOs acting as a facilitator of this process. The users do this by integrating the service offering of the PSO with their needs, personal abilities, and experiences, and their societal context (Grönroos 2019; Osborne 2018 ; Skålén et al. 2015). They may invite the service providers to engage with them in their value creation, implying that the users, not the providers, are in charge of value creation. Hence, it is not a matter of the service users co-creating value with the service organization, but rather the opposite way around. PSL, therefore, understands the service user as the basic unit of analysis (Osborne 2018). This challenges more paternalistic and asymmetric approaches to engagement that are provider-determined, rather than patient- or co-determined (cf. Thompson 2007). The PSL approach also shifts the focus away from the performance of the public service organizations as the key metric of successful services and instead articulates value as the key metric and purpose of such services (Osborne 2018). In this context, services can be understood in the meaning “to help someone’s relevant processes, such that his or her goal achievement is enabled in a way that is valuable to him or her” (Grönroos 2019, pp. 777–78). The emphasis on goal achievement seems to presuppose some level of user intention and awareness. However, individuals may not always have clear pre-determined conceptions of their goals, or they may be unwilling to participate (Grönroos 2019;Osborne 2018), which demonstrates that different types of actions are required by the service provider depending on the situation (Grönroos 2019), setting the frame for this study. 2.2. Co-Creation, Value, and the Importance of Health Literacy A discussion of services through interaction between the public services and the users leads us to the concept of co-creation. It refers to a resource integration process between the provider and the customer (Aarikka-Stenroos and Jaakkola 2012;Vargo and Lusch 2008). Osborne (2018) points out that co-creation assumes an interactive and dynamic relationship where value is created at the nexus of interaction. The value thus is created by this interaction occurring within the context of the service user’s wider life experience (Grönroos 2011;Grönroos and Voima 2013). The literature pertaining to value is vast, with definitions of value spanning across many disciplines (Ng and Smith 2012;Ramsey and Schickedanz 2010). A common feature in all definitions is that value is recognized as a multidimensional concept (Hardyman 2017) . The importance of specific attributes, however, varies depending on the perspective of the individual or organization (Boztepe 2007;Ramsey and Schickedanz 2010). PSL centers on value to individual service users, the public, and society (Alford 2016). Focusing on outcomes for the individual end-user, this article understands value as value in use. The nature of value in use is the extent to which the user feels better off (positive value) or worse off (negative value) (Grönroos and Voima 2013). As pointed out by several authors, value creation thus entails a process that increases the customer’s (or in this case the user’s) well-being (Grönroos 2008;Grönroos and Voima 2013; Vargo et al. 2008 ). Grönroos and Voima (2013) identify that when the value is perceived this way, value creation becomes an ongoing process that emphasizes the user’s experiences, logic, and ability to extract value out of products and other resources used. Understanding value this way also directs our attention to the importance of context (Eriksson 2019;Kaartemo and Känsäkoski 2018). Value in context emphasizes the importance of time and place dimensions and network relationships in the creation and determination of value. This indicates the necessity to understand how patients have different needs, and how their access to resources in a service system varies in contexts (Vargo et al. 2008). Adm. Sci. 2021,11, 16 4 of 17 Directing attention to ability and access to resources in co-creation with vulnerable and cognitively impaired users underscores the importance of the user’s health literacy. Baker (2006) defines health literacy as “the degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions.” Palumbo and Manna (2018) explore positive and negative concerns of value creation in the patient–provider relationship, presenting individual health literacy as a critical requisite for success in these processes. In contrast, problematic health literacy is considered to hinder the establishment of collaborative relationships between the patients and the health care professionals, producing patient disengagement (Porr et al. 2006). Low health literacy also prevents the opportunity to fill the cognitive gaps that are produced by inadequate individual skills through the establishment of clear and comfortable relationships with the providers of care (Hironaka and Paasche-Orlow 2008). The side effects of inadequate health literacy are particularly significant for people suffering from multiple chronic conditions (Hardyman et al. 2019). Studies have also shown that patients may be unwilling to participate in the provision of care due to the physical and psychological weaknesses that are associated with the illness (Arnetz et al. 2008). Research on co-creation typically has been based on an assumption that it is a harmonious process resulting in positive outcomes (Grönroos and Gummerus 2014; Vafeas et al. 2016 ). However, the significance of individual health literacy suggests some possible challenges in the context of vulnerable and cognitive impairment users, which again leads to the possibility of failed interaction processes. 2.3. Co-Destruction and Failed Interaction Although the creation of value is the goal for any co-creation process, scholars have acknowledged that such a goal is not always realized. Sometimes these processes might even produce undesired effects (Echeverri and Skålén 2011;Engen et al. 2020;Pléand Cáceres 2010). Value co-destruction implies a notion that relationships and interactions do not always result in positive or value-creating outcomes. Sometimes, they even result in negative outcomes (Echeverri and Skålén 2011;Pléand Cáceres 2010). Pléand Cáceres (2010, p. 431) define value co-destruction as “an interaction process between service systems that results in a decline in at least one of the system’s wellbeing,” which given the nature of a service system, can be individual or organizational. Thus, co-destruction captures the diminishment of value for one or more actors that are involved in direct interactions with each other (Engen et al. 2020). In accordance with defining value as value in use, this article refers to co-destruction as a failed interaction process that has a negative outcome, resulting in a decline in the users’ well-being. Previous studies of co-destruction have called for the need for studies in different fields to provide a more comprehensive picture of the phenomenon (Echeverri and Skålén 2011;Prior and Marcos-Cuevas 2016;Vafeas et al. 2016). Alford (2016) identifies that any collaborative action with the end-users of public services is likely to have positive and negative effects on the value created. However, still little is known about its distinguishing attributes and its consequences, including deeper insight into value co-destruction in the public sector environment. This is especially true dealing with the provision of health services (Palumbo et al. 2016). Pléand Cáceres (2010) argue that the involvement of users in the delivery process may entail value co-destruction, rather than value co-creation. This is most likely to happen when either the user, the provider, or both participate in the design and delivery of services adopting conflicting perspectives, bringing incongruent inputs, and aiming at the achievement of diverging ends (Smith 2013). Co-destruction can also emerge due to reasons such as insufficient or absence of information (Vafeas et al. 2016) or when the actors involved do not possess certain resources (Smith 2013). In the health care environment, this can be related to factors such as patients lacking the knowledge, skills, experience, and expertise to be effectively involved, leading to inequity in access to care Adm. Sci. 2021,11, 16 5 of 17 (Thomson et al. 2005) , which underpins the argument that problematic health literacy increases the likelihood of co-destruction. The responsibility of public services is to support ease of access and engagement by eliminating barriers (Ministry of Health and Care Services 2019), which clarifies the relevance of PSL’s goal of exploring how public services can be designed to facilitate value creation of service users, in accordance with Osborne (2018). The importance of handling problematic individual health literacy in this context underlines the point made by Grönroos (2019) that different types of measures are required by the service provider, depending on the situation. 3. Materials and Methods 3.1. Design, Sample, and Settings The study had a qualitative design, combining data from in-depth interviews and group interviews in two strategically chosen municipalities in Norway. Municipalities are the lowest administrative and political organizational level in Norway. As of 1 January 2020, there are 356 municipalities in Norway, with differing sizes and demography (Ministry of Local Government and Modernisation 2020). The cases were chosen from a total of 13 municipalities that received a grant from the Norwegian Directorate of Health through Neuroplan 2015 (Ministry of Health and Care Services 2011). The plan was based on the recognition that the care services were not adequately designed and adapted for people with neurological conditions. This meant that changes in the care service’s competence, working methods, service content, and professional focus were considered necessary. The aim was to strengthen the academic breadth of the municipal service offering with a stronger emphasis on activation, rehabilitation, and assistance in everyday life so that it met the needs of the user group (Ministry of Health and Care Services 2011). The plan had two, three-year development programs—one for day and activity programs and one for adapted training programs—for people with neurological conditions. The target groups for measures in the former program were users and relatives, while only users were listed as the target group for the second program. Under the two programs, managed by the Directorate of Health, grants were awarded for 19 projects, divided into 13 municipalities. Overall, 10 of the projects received grants for the development of day and activity programs, and nine projects received grants for customized training programs. Choosing from these 13 cases insured that the included municipalities had made an actual effort to develop services for the target group. They were strategically chosen for diversity because they represented two typical and very different local communities in Norway. The first municipality includes one of Norway’s 15 largest cities according to the number of inhabitants (+60,000). The second is in a rural region with about 6000 inhabitants. They are geographically spread with one located in the northern part of the country and one in mid-Norway. The first municipality developed a day and activity service, while the other developed a customized training program. A contact person in each municipality recruited the individual respondents according to a set of pre-set criteria. Users had to be in the age span 18–70 years old with a neurological condition. They had to receive municipal services or have received this earlier due to their neurological condition. Relatives had to be close relatives to users with neurological conditions, meaning the users’ spouse, child, parent, or sibling, depending on the users’ family situation. The municipal leaders were to be recruited from middle managers with responsibility for specific services to the target group, adjacent services with significance for the target group, or with responsibility for the allocation of services. Employees had to be recruited among professionals working directly with users in the target group. A total of 28 respondents were included in the study, including nine users, seven relatives, five employees, and seven municipal leaders. The users’ main conditions were multiple sclerosis (four users), stroke (three users), Parkinson’s disease (one user), and optic neuromyelitis (one user). In addition, a number of additional conditions were reported, Adm. Sci. 2021,11, 16 6 of 17 i.e., epilepsy, diabetes, substance abuse, and psychiatric symptom pressure. There were six women and three men among the users. As for the relatives, there were four women and three men. Four of these were children of a user, two were siblings, and one was a spouse. Six of these were relatives to one of the included users. All included employees worked directly with the users—in the first municipality in a daycare center (three respondents), and in the second, in the municipal physiotherapy service (two respondents). In the latter municipality, these two respondents constitute all of the employees in the service aimed directly at the target group. All of the employees were female. Seven leaders were included in the study, three in the first municipality and four in the second. In the first one, they were the heads of a daycare center for rehabilitation, work and activity, and the allocation office. In the latter, the heads of home services, occupational therapy, physiotherapy, and the allocation office were included. Respondents are relatively evenly distributed across the two municipalities. Three different types of relative relationships are represented in the material. The user’s diagnoses cover both acute and progressive conditions and additional, secondary diagnoses that frequently occur among people with neurological conditions and can be important for, among other things, functional level. The data material is therefore understood as trustworthy. Table 1provides an overview of the number of respondents included in the study. Table 1. Included respondents by type and municipality. Municipality. Users Relatives Employees Leaders Total 1 4 4 3 3 14 2 5 3 2 4 14 Total 9 7 5 7 28 3.2. Data Collection and Analyses In-depth interviews were used to collect data from service users and relatives. These qualitative interviews seek to understand the world as viewed by the respondent and aim to convey the meaning of people’s experiences and to reveal their experience of the world before scientific explanations (Kvale and Brinkmann 2009). The purpose was to understand the informant’s experiences and how the informant reflects on them in accordance with Spradley (1979). In-depth interviews of people with a serious illness or their close relatives touch on topics that often naturally affect the informant’s life situation and, in many cases, can be perceived as very personal, emotional, and sensitive. The relationship between informant and researcher in the interview situation is therefore very central and the quality of the interviews is consequently based on the fact that trust has been established between informant and researcher (Tjora 2017). To assure this, only one interviewer conducted all interviews and started with information about the study, including the respondent’s right to withdraw from the study at any time. The interviews were either conducted at the municipality’s premises or at the respondent’s home in accordance with the latter’s own wishes. Furthermore, group interviews were conducted to collect data from municipal leaders and employees. These interviews aimed to generate data based on the synergy of the group interaction in accordance with Green et al. (2003). Due to logistical challenges, it was not possible to conduct a group interview with employees in one of the municipalities. These were therefore interviewed individually. A total of 18 in-depth interviews and three group interviews were conducted. This is illustrated in Table 2. All interviews had a duration of one to two hours and were conducted in February 2020. Adm. Sci. 2021,11, 16 7 of 17 Table 2. Conducted interviews. Respondents In-Depth Interviews Group Interviews Total Users 9 - 9 Relatives 7 - 7 Employees 2 1 3 Leaders - 2 2 Total 18 3 21 A semi-structured interview guide was prepared for each of the respondent categories prior to the data collection. These were the basis for all the interviews. Table 3provides an overview of the topics and subtopics addressed in the interviews. Some topics were only relevant for one or some of the respondent groups (e.g., relation to the user). In these cases, the relevant respondents are listed in parentheses. Table 3. Interview topics. Main Topics Background Information Cognitive Impairments Received and Needed Services Interaction between User and Service Providers Role of Relatives Sub-topics Gender, age, family, work, living conditions (users, relatives), relation to the user (relatives), position/function (employees, leaders) Users’ diagnoses, cognitive and physical functional level Expressions of users’ cognitive impairments Users’ ability and willingness to participate Users’ need for help and services received (users, relatives) Experiences of scope and quality of services (users, relatives) User involvement and interaction Importance of user involvement and influence Perceived user influence Communication/ Information Other municipal facilitation (e.g., individual adaptions) Barriers/challenges for user involvement Perceptions of roles Relatives’ involvement and interaction with the service provider Importance of involvement and influence Perceived influence Barriers/challenges for relatives’ involvement Municipal facilitation All interviews were audio-recorded and fully transcribed verbatim. Transcriptions were analyzed thematically by a stepwise deductive-inductive analysis in accordance with Tjora (2017), using NVivo. The transcripts were analyzed starting with detailed coding. The codes were then merged and condensed and grouped into fewer categories. These categories were explored further, resulting in broad themes. All quotes presented from the interviews are translated from Norwegian to English by the author. 3.3. Ethical Assessments The project was approved by the Norwegian Centre for Research Data (NSD), with project number 866161. Prior to the interviews, all included respondents gave a written consent to participate. They were informed about the study and received information about the possibility of withdrawing at any time. The interview recordings were deleted after transcription, and all information was anonymized before the transcripts were stored. Adm. Sci. 2021,11, 16 8 of 17 4. Results The following section reports findings from the interview study. First, it presents the occurrence of cognitive impairments among the users and how these were expressed in the interaction with the service providers. Second, findings on how the service providers facilitate co-creation with these users are presented. Findings on this topic focus on how this actually appeared at the individual level. 4.1. Occurrence and Expressions of Cognitive Impairments In raising the question about cognitive functional level, it should be noted that the assessment of cognitive function level described here is not based on formal diagnoses of cognitive function but on the users’ cognitive impairments and their effects as described by users, relatives, employees, and leaders. In the interview data, cognitive impairments and expressions of these were described in five out of the nine users. The interviews uncovered that, in some cases, there was a discrepancy between the users on one hand and relatives and professionals on the other, when it came to considering the users’ cognitive functional level. In cases where the users were described as significantly cognitively impaired by relatives and employees, the users themselves reported that they experienced these impairments to a lesser extent. So the stronger the experience of these impairments was among relatives and employees, the less aware the user usually was of the impairment her- or himself. It was also found that the users who did not suffer from any cognitive impairments did not need or receive many services from the municipality beyond participating in a training program. Therefore, they had limited interaction with the municipal services. When they did, they represented themselves and their interests in an adequate way, according to all respondent groups. Among the users described as having cognitive impairments, these were expressed in several different ways directly affecting both the users’ ability and willingness to participate in co-creation. In the following, these expressions are described briefly and sorted into five main categories. Five Expressions of Cognitive Impairments 1. Lack of reality orientation and ability to see one’s own situation: Both relatives, professionals, and managers, consistently pointed this out in the interviews. It was demonstrated through descriptions of users having unrealistic expectations of what they can achieve or what can be arranged for them and their inability to take long-term perspectives linked to their own illness situation and future prospects. The latter is related to both rehabilitation and the need for help and services. 2. Difficulty understanding and remembering information: Respondents in all groups acknowledged these challenges, although to a lesser degree among the users, as is the case with the expressions of cognitive impairments in general. Two users described how they had realized that they had problems receiving and absorbing information. 3. Inability to make their own choices and see their consequences: The respondents often pointed out the users’ inability to make choices on their own behalf and understanding their consequences. The employees described this as an obstacle for good interaction between user and services and for tailoring the services to the individual user’s needs. 4. Problems expressing one’s own needs and representing one’s own interests: Lack of ability to process and understand information, memory impairments, and inability to see future perspectives made this challenging for the users when interacting with the municipalities. 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